Childhood dementia remains under-recognised and widely misunderstood, despite more than 140 neurodegenerative conditions, including Niemann-Pick disease type C, being known to cause it. As these conditions progress, children and their families face increasingly complex challenges. Families often provide intensive, round-the-clock care, with parents becoming caregivers, nurses and advocates all at once. The impact on family life can be profound, as can the effect on mental and emotional wellbeing. Families may live with ongoing uncertainty, exhaustion and anticipatory grief, while also facing the devastating reality of bereavement.
The systems designed to support children and families can also be fragmented and inconsistent. Families are often required to navigate health, education and social care services that do not always work together effectively or fully recognise the distinct and complex needs of those living with childhood dementia…
Which is why we are working alongside colleagues and friends across the sector and around the world to increase the visibility and understanding of childhood dementia. Together, we are advocating for better coordinated care, earlier and more timely diagnosis, equitable access to treatments and therapies, and greater investment in research – so that children and families receive the support, care and hope they deserve.
Niemann-Pick disease type C (NPC) is a rare, inherited, progressive neurodegenerative condition and a leading cause of childhood dementia. While dementia is often associated with older age, childhood dementia encompasses over 140 genetic conditions that result in cognitive decline, loss of skills, and premature death in children and young people.
Families affected by childhood dementia face profound challenges, including long diagnostic journeys, limited treatment options, fragmented care, and significant emotional, financial, and practical burdens.
This poster presents findings from a cross‑condition lived experience survey exploring childhood dementia across:
Preliminary findings from families in England and Scotland highlight:
The poster calls for greater recognition of childhood dementia within research, policy, and care frameworks.
We are thankful of the extensive media coverage this subject has received lately, which has helped to highlight the challenges families affected by childhood dementia in Scotland and across the UK face – further amplifying the voices of parents and carers who are calling for better recognition, earlier diagnosis, and coordinated support.
Childhood dementia is increasingly being recognised within national dementia policy in Scotland, marking a crucial shift towards inclusion.
This work was led and supported by:
We sincerely thank the children, young people, and families who contributed to the Lived Experience of Childhood Dementia Survey, and all organisations working to improve awareness, research, and support for childhood dementia.
For further information about the poster or this work: